Hey everyone. So, last February was the end of a very long winter for me. And facing similar struggles was my good friend Catherine Richardson. Catherine and I talk pretty much everyday, because, well, she’s an awesome sauce spoonie and always fun to talk to. We make jokes about our confusing bodies and share our constant poop struggles (true friendship, guys). We’ve never been in the same room, or even the same country, but when you can casually ask somebody, “How’s the poop coming?” that starts to become a lot less important.

I’m spending a lot of this post talking about poop, which actually has nothing to do with what I actually want to talk about. I could blame the brain fog here, but I think we all know by now I’m just a senile old woman stuck in a 25 year old body. [Read more…]

Happy Holidays, everyone! My bi-religious family, as my cousin deemed us, celebrated a wonderful Christmas Day yesterday and look forward to a lovely Hanukkah with my family this weekend. I hope you and your loved ones have a merry celebration of whatever holidays you celebrate this time of year.

Once the holidays are over, though, a lot of us feel incredibly anxious about what will be coming in the new year, myself very much included. In my personal, anecdotal experience, a lot of spoonies seem to be pretty Type A. We like to have plans in place to try and fix the thing we’re upset about. We research new treatments and try new doctors and ask people in message boards for advice. So when we’re worried for ourselves or our loved ones, or our country in general, we want to do something. We want to march and protest and speak for what’s right.

It’s hard to do that when speaking too long leaves you winded, and being out of bed for more than a few hours a day makes you sick. It can be frustrating to think that we’re so limited in our ability to fight against what we believe is so wrong.

That’s the reality of any group of disenfranchised people. It’s harder to speak out than it is for other people. That’s how they stay disenfranchised.

But it’s becoming easier to make our voices heard now, thanks to the internet. [Read more…]

Dear Spoonies*, Loved Ones of Spoonies, or People Who Just Kinda Give a Shit,

I have a mission for you.

It’s happened. Donald Trump is our president-elect, there will be a Republican majority in the House and Senate and an open vacancy in the Supreme Court.

Our health care is at risk.

If you’re like me, you’ve spent the last two years hearing Republicans promise to “repeal ObamaCare Day One” with a churning stomach. Not that churning stomachs are out of the norm for a lot of us. We’re the chronically ill, and nausea is often a part of the package deal. But this was a different sort of nausea.

This was fear.

Fear that the items in this new law that literally save our lives — the pre-existing condition clause, the ban on lifetime and annual caps, the requirements for increased mental health coverage, etc — will be whisked away in a cloud of partisan dust in the political tug of war that often feels like it’s more about one team winning and less about the lives they represent.

I can honestly understand how that happens. When there are people whose job it is to literally “whip” congressmen into the party line (who consequently control their funding), it’s easier to remember the demands of your colleagues than the demands of your constituents.

So if we want the parts of the Affordable Care Act (which is the same thing as ObamaCare, in case anyone was confused about that, further referred to in this article as “ACA”) that are so vital to our continued prosperity and livelihoods to remain intact, we have to make it personal. We have to tell our stories and help our representatives understand the real consequences if they fail to replace the ACA with a substantive measure that protects its disabled citizens.

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Disclaimer

None of the opinions or experiences expressed on this site is professional medical advice tailored to your own situation. Please consult a medical professional before making any changes to your health management plan.